When we got the call that our nieces needed help, without question we headed over. We had no idea that we would wind up parenting one of them to adulthood, but even if we had, we would have gone.
When we chose to adopt a second child with Down syndrome, we were told he was perfectly healthy. Had he not been declared healthy, our affirmative answer would have remained.
He wasn’t healthy, but we didn’t find that out until after his adoption was finalized. It was too late to get a medical subsidy, even though his medical condition (Hirschsprung’s disease) is congenital (he was born with it), but the doctors in the neonatal unit didn’t test him, and the adoption agency which had guardianship over him didn’t advocate, so he went undiagnosed until well after his adoption was finalized. By all means he qualifies for this help, but after burning up many days and innumerable phone calls, including to legislators, with Ben’s state of birth telling me it’s Michigan’s problem and Michigan telling me it’s a problem with his state of birth; I let it go. After all it’s only money.
Now we’re going on 3 years of attempting to secure the Children’s Waiver for Benjamin. This program would cover respite, community living assistance, incontinence supplies and more, but because of the way it’s scored as 3 separate domains, Ben isn’t considered severe enough for the program. (The scoring favors childrens with one, extremely severe issue, such as a child who is ventilator dependent or the most severely developmentally disabled children). I was actually told that if Ben had injured himself or one of us, such as a broken bone, we would probably move to the top of the list. We are diligent to ensure that this doesn’t happen, and it’s detrimental to his score. Seriously.
Alas, I have been contacting anyone who will listen, from our local departments all the way up to the Governor’s office and everyone in between as well as our representatives in D.C. All of whom listen, show concern and empathy, and wring their hands.
It appears that we have no recourse.
Our son’s needs have enormous depth and breadth, and our ability to provide them while remaining healthy ourselves is limited, and we are always living at that limit. Often at the expense of our other children. In my exploration of this subject I have found numerous other families in similar situations who are also at a loss.
The crux of this post is this: I’m calling BS on pro-life politicians.
Call yourselves what you are: pro-birth. Once a child is born they’re hung out to dry. In the state of Michigan, there are no supports available to any but the most severely disabled children, in fact, less than 500 in the whole state.
Some families, like ours, keep plugging and do everything in our power to give our children everything they need at any cost to ourselves.
Some families choose to live in poverty because the supports are more valuable than their income.
In many states, children with disabilities automatically get SSI and Medicaid. That means that regardless of income, even if it’s into the 7 or 8 figure range, children are eligible for these safety net programs. Michigan is not one of those states.
In summary, as a strongly pro-life family who has fostered family members and adopted a child with special needs, our own pro-life party has hung us out to dry.
To me, pro-life means taking the necessary steps to care for children at risk and creating a safety net for families caring for them, not a platform that promotes overturning Roe v. Wade. If you want people to choose to bring children with disabilities into the world, then ensure that their families will thrive by enacting a robust supports program that will empower them to flourish instead of feeling stymied at every turn and using precious resources to fight for every single millimeter we get.